Church Update

At age 8, Ethan Bruns was diagnosed with Atypical Hemolytic-Uremic Syndrome, a rare immune deficiency disease.

Even though he goes to McKay-Dee Hospital in Ogden, Utah, every two weeks to receive one of the most expensive drugs in the world, the experience has opened unexpected doors and welcomed new friendships. Now the Bruns attend rare disease conferences and share hope. Ethan’s dream is to become a geneticist so he can help find cures for his other buddies who have rare diseases.

“You can achieve anything, even if you have a rare disease,” Bruns told his audience in 2017.

More than 7,000 types of rare and genetic diseases are affecting one in 10 Americans and an estimated 350 million people worldwide, according to research by Global Genes, a nonprofit rare disease advocacy organization.

Because of individuals and families like the Bruns who live with rare diseases, The Church of Jesus Christ of Latter-day Saints is calling attention to this cause and lending its support, said Douglas G. Richens, a senior manager in the Church’s Priesthood and Family Department.

“We’ve desired to reach out and make sure that those members feel that they belong, that they are understood, that leaders are in a position to minister effectively to their needs,” Richens said. “What these families go through is complex. The mental energy they go through just to explain their condition, their situation, over and over, let alone deal with it, let alone pay for it, and everything else. … Church leaders are aware of this.”